Hi Michelle, Having my tonsils out is the worst, in addition to the biopsies in the rest of my mouth. I can hardly eat. My mouth really hurts, and you had a wisdom tooth pulled too? Ouch! I don't have a start date for radiation yet, I have to go to the dentist first. I am waiting for results also. My ENT suspects it's in the tonsils. We are in a close place. Keep in touch.
Joel

The doctors found my primary tumor at the base of my tongue by using this scope that went down my nose. They took out my tonsils when they biopsied what they think is the tumor along with about six other spots in my throat and mouth. I will get those results in a few more days. I asked my oncologist if the radiation would be more painful than having my tonsils out and he said yes, but I don't believe him!!! Is your tumor HPV positive? Mine is. I think just like Michael Douglas. Will that get me a spot on Letterman?!! -Michelle

@ Michelle Ann,

Did they say MD's OC was due to HPV?

I hadn't heard that before.

They haven't officially said MD was due to HPV..... but it was BOT and from what he says about what he knows of this cancer, he's got it beat, leads me to feel it was due to HPV and they just aren't saying it cuz he's a celeb. Why else would someone say they have it beat only 6 months or so after the beginning. For me, I can't say I have it beat for 5 years, but they always tell you it's different for HPV as you don't have to worry so much about it coming back.

Joel~ so far, have they only found it in your lymph nodes?? I don't know what HN means in ur signature, but if that's the case, that's kind of odd, usually it starts somewhere in your mouth and then spreads to lymph nodes. Mine started on my right lateral tongue and then spread to my lymph nodes.

Either way, I will be thinking of you, and hoping that the biopsies are negative, but with lymph node involvement, it almost always is somewhere else as the primary, so hope they figure that out for you.

MD has, according to media reports I read, a recent tobacco history so it's possible that the cause is a combination of the virus and tobacco. Remember the "HPV study" that we all refer to concluded that if you present yourself with a distinct profile (white male, primary in the BOT or tonsils, mets to a node, college educated, etc) then you have a 70.3% chance that you will test positive for HPV. So that also means that if you present yourself that way you also have a 30% chance that the virus is not involved. Even if the cancer cells test positive for HPV some cancer experts decrease survival chances when tobacco use is also in their history. Whether MD's cancer is HPV related or not is easy to test and I'm sure that has been done but obviously they feel they do not want to share those results.

From the scant info I have read, it doesn't seem to me that MD fits the HPV+ profile very well:

Isn't he a bit old (66)?

Doesn't Stage IV HPV+ OC normally present as one or more obvious large swollen lymph nodes and a small primary?

He said on a recent "Access Hollywood" interview that he saw doctors last January and May about a persistent sore throat, then went in August when his tongue was bothering him.

http://www.accesshollywood.com/mich...flirty-texts-to-matt-damon_article_42013

I don't think the age is necessarily an important factor but I have read that 1948 was kind of the birth year break for HPV but I can't believe that as I'm sure we had HPV before.

Most of the HPV + patients I have talked to only found the cancer because of a painless swollen node and not a sore throat and I for one had a small to nonexistent primary. Again the study does conclude that you have a 30% chance chance of having a primary in the orophyrnx region and not be HPV+.

Don

From my point of view, MD could also fit the HPV profile. I was 60 years old when I was first DX and both my tumor biopsies tested positive for HPV 16. I did not have any large swollen lymph glands and my only symptom was an earache and then a sore throat for months. I had a large primary BOT tumor. Of course, my cancer came back which does not fit the HPV profile of successful first time TX (drat it)
He's not "too old" since my understanding is that an important factor is number of sexual partners, i.e., the more you had, the better your chances of having an HPV infection that didn't clear up. Most movie stars have high "numbers", heck even guys like me who were single in the 70s could easily exceed the numbers I've seen in studies.

I'm impressed that MD is giving such a public warning about the dangers of smoking and drinking. Young people are more likely to limit or give those activities up then sex.
charm

HN= head and neck. I had 4 lymph nodes removed, only one tested positive for SCC. Even the suspect remaining lymph nodes are small.